Democratic Representative Jillian Gilchrest of the 18th District of West Harford is advocating for endometriosis on the Connecticut state agenda and eventually hopes to push this legislation to the national level. She is calling for expansion and improvements in three key areas: endometriosis research, endometriosis-specific training for healthcare professionals, and access to endometriosis-related healthcare. If Gilchrest’s bills were to be implemented on the national level, women suffering from endometriosis would be given the care they deserve, and increased focus on research might uncover the aetiology for this illness without a cure.
Endometriosis is a painful gynaecological condition that causes moderate to severe pelvic pain associated with menstrual periods. The disease can have a wide range of negative effects, including but not limited to nausea, pain during intercourse and, in some cases, infertility. Treatment options for endometriosis have been historically limited, as the preferred first-line therapeutics are non-steroidal anti-inflammatory drugs (NSAIDs) and oral contraceptives (OCPs)—both off-label options that are not disease-modifying and, thus, can have limited effectiveness in mitigating endometriosis-associated pain.
Marketed therapies for endometriosis include drug classes such as gonadotropin-releasing hormone (GnRH) agonists, progestins, oestrogen antagonists and, more recently, GnRH antagonists. While some of these medications can be administered orally via tablet, others are injected directly, which limits physicians’ abilities to titrate the dosage provided. In addition, the side effects associated with these therapies can be aggressive, creating menopausal-like symptoms such as hot flashes. Endometriosis medications also have limited long-term use, as NSAIDs and OCPs are the only options that can be used for more than a few years. Another key issue with existing endometriosis therapies is that non-hormonal therapy options are lacking. A GlobalData key opinion leader (KOL) expanded upon this problem, stating:
“Probably the most significant unmet need in endometriosis is that women with pelvic pain are usually treated by hormonal drugs, which are contraceptive. So, when the woman has pelvic pain, but she is also [trying] for pregnancy, she has to choose between [treating] pain [by] undergoing hormonal treatment or [pursuing] pregnancy. Future strategies should be targeted to find [a] non-contraceptive and non-teratogenic, of course, pharmacological solution to treat pelvic pain in endometriosis.” – EU Key Opinion Leader
Representative Gilchrest has championed endometriosis in the state of Connecticut to increase funding for research, improve healthcare professionals’ endometriosis-specific training, and expand access to adequate medical care and products. She is part of an organization called the Endometriosis Working Group, which held a press conference on 17 February to discuss their 2022 recommendations:
- Improved training for healthcare providers
- Requiring all healthcare providers to receive endometriosis-specific information on areas such as best practices for identification, treatment of the disease, explicit and implicit bias, and more.
- School nurse training
- All school nurses receiving school nurse training and toolkits to continue education on endometriosis.
- Menstrual equity
- Requiring all menstrual products to be free in all Connecticut public schools, K-college, shelters, jails, and prisons.
- Access to medical care
- Requiring Medicaid and insurance coverage for endometriosis care
- Fertility preservation
- Requiring Medicaid and insurance coverage for fertility preservation for individuals with endometriosis.
- Education of students
- Ensuring that endometriosis, uterine fibroids, polycystic ovary syndrome (PCOS) and interstitial cystitis (IC) are included in the Human Growth and Development curriculum.
- Data collection
- Working with the Department of Public Health to initiate clinical data and tissue collection to better study and understand endometriosis.
- Expanding endometriosis research with adequate representation of Black patients, Latinx patients, patients of colour, transgender and gender-diverse patients, and patients with disabilities.
As mentioned by Rep Gilchrest, endometriosis has no cure and the only method to definitively diagnose the disease is via laparoscopy, a potentially invasive and costly surgical procedure. Without a laparoscopy confirmation, patients are treated with ‘suspected’ endometriosis, whereby physicians treat patients under the presumption that endometriosis is the cause of their symptoms. The non-specificity of symptoms and variety of symptomology from case to case, however, means that endometriosis can be difficult to diagnose. As a result, many women go undiagnosed for years or are misdiagnosed altogether. The normalisation of painful periods also contributes to endometriosis patients’ prolonged suffering.
Gilchrest and the Endometriosis Group are now focused on a public health bill and an education bill to tackle their 2022 recommendations, which they hope to propose to the state Capitol. If successful, these bills would further research and healthcare professionals’ training for a disease that is too often overlooked.